My Rheumatologist finally called me back this afternoon and we talked. She said she believes the fatigue is not the MTX but the disease. She said she also agrees the MTX is not working. She is adding another medication for me to take daily on top of the MTX due to the increased overall pain and the fact I am still having flares. She also wants me to start the new medication as soon as possible and to move my October appointment to a further date as she would like me on the new medication for a few months prior to seeing me again. Feeling a little over whelmed and hope the added meds help.
Try not to be overwhelmed. This is a complex, ever-changing disease. Finding the right med combo takes time. I know it seems like life is flying by while you sit on the sidelines waiting for something, ANYTHING! to happen med-wise. Hang in there.
I believe it's Sulfasalazine. Taking daily 2 in the morning and 2 at night. She said the other option was Enbrel but it took longer to work, so she wanted to try this first. Thanks Marietta :-)
Marietta said:
What is the new medication?
Try not to be overwhelmed. This is a complex, ever-changing disease. Finding the right med combo takes time. I know it seems like life is flying by while you sit on the sidelines waiting for something, ANYTHING! to happen med-wise. Hang in there.
Of course you're feeling overwhelmed! But at least your rheumatologist is taking action. She clearly has a game plan, and if the sulfasalazine doesn't do anything for you, she has another card that she is going to play.
One of the big problems with this disease (and diseases like it) is that it takes so long for treatments to start working. Meanwhile, the disease itself waxes and wanes on its own. I could not be a rheumatologist -- I'm the type who would want to see the results of my decisions quickly. I'd be much better in cardiology, LOL.
As Marietta says, hang in there, and look after yourself while your rheumatologist looks after you. You're lucky to have one that seems on her game, and who cares about what happens.
Seenie
PS Sulfasalazine did nothing for me, either good or bad. Might just as well have been eating humbugs.
It's a good thing that your doc recognizes that it's not enough and taking action. Don't see it as a bad thing but as a good thing. I'm having some trouble finding the balance too between what my body can handle and what actually helps.
One of the things I hate the most ( aside from the PsA itself ) is the waiting to see if the meds will work. I know how you feel. It's a real downer but a step forward.
Thanks you Seenie and Dini :-) I'm realizing that finding the right meds alone can be a long journey! My big issue lately is the fatigue and the Rheumatologist said once the disease is under control my energy level should increase. I'm looking forward to that day because I am finding I burn out once the afternoon hits. Having a tough time managing my energy for the day. When I look back at this past year I realize I started to burn out a while back but couldn't understand why I was so tired all the time and just kept pushing myself. I have blood work this morning and then I will be starting the sulfasalazine. My Rheumatologist mentioned Enbrel but said it takes longer to work so she wanted to try this and see how it works.
Seenie and Dini ... sounds like a comedy routine. LOL
Your rheumie is right about the fatigue. The biggest and fastest change for me on Enbrel was lifting of fatigue and brain fog. Later, a reduction in pain, swelling and stiffness. I knew very early on in the treatment that it was going to work, although it took several months for that to happen.
SSZ is a good move, for the reasons she has given. But if you don't feel any hints of positive results in a couple of months, I'd be rethinking the choice at the end of three months. (I don't mean a dramatic turnaround, I mean noticing some positive changes.) Don't wait for three months to be up and then say "Well I might be a little less tired, maybe if we try a bit longer ...". Move on!
Thanks Seenie.. I will totally move on if my energy level doesn't pick up because I'm extremely short of spoons and it's exhausting just thinking about how to manage my day! I guess the term living in the moment fit's on a day like today.
Thanks Lamb, the pharmacist said to make sure I continue to take the folic acid. I assume I still miss it on MTX days?
I take my MTX injection tomorrow night. Seeing my doctor in the morning so I will confirm with him :-) He has been away in Ireland so I haven't seen him in a while and I'm not sure he is aware of the new plan yet. I went for blood tests this morning, however it was unsuccessful so I will be doing that again tomorrow too.
tntlamb said:
One of the new developments with SSZ as its bcoming more widley used again is to also add folic acid daily
Yes, I take the SSZ with the MTX. Tomorrow I am increasing the dose to twice daily and seeing my doctor again next week to check in and see how I'm doing with the increased dose. The nurse managed to get my blood work done, so today was a better day however my lower back is acting up. Going to hit the trails with my Lab while I'm still feeling good enough to move :-)
And hitting the trail with your canine friend will make you feel better. It always works for me. :-)
TaraLynn said:
Yes, I take the SSZ with the MTX. Tomorrow I am increasing the dose to twice daily and seeing my doctor again next week to check in and see how I'm doing with the increased dose. The nurse managed to get my blood work done, so today was a better day however my lower back is acting up. Going to hit the trails with my Lab while I'm still feeling good enough to move :-)
Thanks Seenie :-) we managed to do just over 3 miles, I hurt but I had to do it! Unfortunately all probably used all my spoons for the day too....I really do need an increase in spoons one day soon ;-)
Lamb you mentioning Seenie"s scooter (Love Scooters!) reminds me about our trails around here. We have an aging population on this little Island along with a lot of people with disabilities, The Islanders need to get on the recreation committee about making some of these trails wheel chair and scooter friendly. Iv'e brought it to their attention before however I think we need to continue to push.
LOL what a tease. The red panels on my scooter got damaged because I was off-roading. This is a "mall" scooter and not supposed to go off-road. There are lots of things I shouldn't do. But I do them anyway! A girl's gotta go where a girl's gotta go.
Gosh, I guess I never told you about my "best ever" scooter performance! We were RVing in a campground with no sewer facilities on the sites. Waste water and sewage has to be carried to the "dump" in a plastic tank on wheels. Quite heavy to pull when it contains a week's toilet sewage. So I rigged it up so that I could tow it behind my trusty scooter. Like I say, there are lots of things I shouldn't do. LOL DH was very impressed because he didn't have to drag it around.
tntlamb said:
Tell us again about the red panels on your scooter and hitting the trail seenie.....
Three miles is excellent! And your friend loved it too, I'm sure. Yes, when you have mobility problems, even a 2 inch step can be a big problem. I'm well enough and strong enough to get off and get myself over minor barriers, but not everyone is so lucky. I do get strange looks ... do I care?
Never fear, there WILL be an increase in your spoon allocation one day. Soon, I hope.
TaraLynn said:
Thanks Seenie :-) we managed to do just over 3 miles, I hurt but I had to do it! Unfortunately all probably used all my spoons for the day too....I really do need an increase in spoons one day soon ;-)
Lamb you mentioning Seenie"s scooter (Love Scooters!) reminds me about our trails around here. We have an aging population on this little Island along with a lot of people with disabilities, The Islanders need to get on the recreation committee about making some of these trails wheel chair and scooter friendly. Iv'e brought it to their attention before however I think we need to continue to push.
Seenie you're awesome! Love the scooter stories!! You should have some flames painted on that Scooter! If I get one...I'm getting mine custom painted ;-) My husband can keep checking out Harley's and custom paint jobs for bikes, I'll tell him to find a good one for my scooter ;-)
I've had mobility problems off and on and have crutches just in case. My last flare in my knee my husband made a makeshift wheel chair (kitchen chair on a towel) to slide me around but I couldn't get on it. I actually was so mad and frustrated from trying to get on it, I took the crutch held it up and told him to buzz off!! I can get pretty mean when I flare and lose my independence....I would rather take 20 min to get to the bathroom then get help some days, I'm stubborn but that crappy attitude also helps me cope....something I really need to work on if I want to keep friends and family around ;-)
Seenie said:
Three miles is excellent! And your friend loved it too, I'm sure. Yes, when you have mobility problems, even a 2 inch step can be a big problem. I'm well enough and strong enough to get off and get myself over minor barriers, but not everyone is so lucky. I do get strange looks ... do I care?
Never fear, there WILL be an increase in your spoon allocation one day. Soon, I hope.
TaraLynn said:
Thanks Seenie :-) we managed to do just over 3 miles, I hurt but I had to do it! Unfortunately all probably used all my spoons for the day too....I really do need an increase in spoons one day soon ;-)
Lamb you mentioning Seenie"s scooter (Love Scooters!) reminds me about our trails around here. We have an aging population on this little Island along with a lot of people with disabilities, The Islanders need to get on the recreation committee about making some of these trails wheel chair and scooter friendly. Iv'e brought it to their attention before however I think we need to continue to push.